Nov 2009 Book - Still Alice

[Liz]

I'm about halfway through...should be finished in time for your pithy comments...if I can remember what the book was about.

[Nasoosie]

Oh, Liz----you can bet that the comments will be pithy if you can't remember what the book was about! Your sarcasm may escape those of us who might not remember what sarcasm is by the time we finish the book!

[Liz]

I finished this book at 2 am when I couldn't sleep last night. Wait, wasn't that a symptom?

[AlmostThere]

I just thought I'd share something from this morning;
At bowling today one of the ladies on the other team is going through this with her husband. She almost didn't come today because she said she is just exhausted and scared. She said early this morning he sat on the edge of the bed and asked where he was. She told him he was at home and to go sit in his favortie chair (as she hoped it would be familiar to him), and she'd go make him some coffee. He then asked why she was making coffee before going to bed. She had to explain to him that it was now morning. He isn't sleeping much because he is frightened most of the time..... and so it went....
This has just recently started and he is sinking into this disease quickly.
I have no particular point to make in posting this...just wanted to share.

[Liz]

It's a scary and tragic disease for the victim and caregivers as well.

[Paulette]

Oh Lenora, my heart goes out to your friend. There but for the grace of God go I, isn't that the saying? Sending prayers for her and her hubby.

[mitch5252]

..

I hear ya - yesterday, George all of a sudden wanted to change the way he figured out his insulin injections. And it wasn't a good 'method'. I had to explain to him 3 times why it wouldn't work. He finally said he understood what I was saying, but I don't think he really did. And he's been diabetic for over 20 years! At least he still knows who I am! I'll surely hate when THAT day comes...

Be extra kind to people - you never know what burdens they're shouldering.


..

[BirdbyBird]

"Be extra kind to people - you never know what burdens they're shouldering. "

What Mitch says........

[Cedar518]

I remember my father shaking his head and saying sadly,.."there's something wrong with me, isn't there?" My mother was in denial about his retained abilities,... she'd leave a note for him, he was no longer able to read it or comprehend what she'd written. He thought she was his sister who had passed away years before. of course by this time he didn't know me at all. I lost him long before he passed.

[Liz]

Yes, what Mitch said. I went for my mammogram today. While waiting, an older woman came back from having hers done and was directed to her changing booth. I thought it odd that she didn't close the door when she changed back to her clothes, but when she came back to the waiting room looking confused and asked if this was where she should wait, I knew it was more than just odd. Another lady went to get the nurse to take her back to the lobby where I sure hope someone was waiting to take her home. Surely she didn't drive herself there?

[Bethers]

Ok, it's time for someone to start this review - and since Sparkle wanted to before - she needs to remember what she says she'll have forgotten, and get this review going - albeit a couple days early still.

[PeggyinCT]

Okay, I finally got Still Alice from the library and will take it to read on my long flight to Japan on Wednesday. I'm funny about what I will spend money on and if I can borrow a book from the library, I won't buy it. I'll be reading the book and checking in on your reviews while I'm traveling.

[carold]

Hmmm, all these years I thought "pithy" had one meaning, and now I find out it's just the opposite Been putting off reading this book since we are now going thru this with MIL and wanted to read light stuff. But think I'm ready now. carold

[Bethers]

This book actually didn't depress me - yes, it mad me sad, yes, it made me do a lot of thinking, yes, at times it made me cry, and other times I laughed. But more than anything else, it made me think and realize a lot more about what I can do - for me and for others - with and without this illness and others that do many of the same things.

One small story - my mother did not have Alzheimer's. But when she had a heart attack and stroke one night, it effected her brain and thinking. She no longer knew a lot of people. She had no sense of time. Much of what Alice goes through. One day, I was sitting with her and one of the ministers of the nursing home she was in came over to talk to me. We talked "over" her. Usually she was fine with this - or so I thought at the time. Alice made me think - wow, maybe sometimes she was fine with this - but others - probably not. And here's the rest of the story:

The minister and I talked about my upcoming divorce. All of a sudden, I noticed my mother was sitting next to me with tears rolling down her face. I took her face in my hands and asked her what was wrong - and her reply "Oh, my poor baby, you and Bill are divorcing?" There was no consoling her and unlike most conversations where she quickly forgot anything said - she remembered this one for several days. A few days later, her hospice nurse called me and asked if I was divorcing. I said yes, and figured she had spoken with the minister - no, my Mom told her!

My point is - at that time I realized that I would not again talk "around" my mom in the same fashion. When I was with her - anything I said was for her ears - and I never again talked like she wasn't there - speaking of her in the 3rd person. Because I would never know what she was hearing, etc.

Alice brought that home for me again. And brought home to me once again that because someone has an illness, no matter what it is, I should have no less respect for the person.

I'm going off track but this book meant a lot to me - and I wish I had it to read before my Mom had suffered with the problems she did, and before my neighbors Father had alzheimer's and I probably ignored him many times when I might have sat and talked. Or before I moved to WI and had another neighbor suffering from this terrible illness, and I could have again done more - even if just in how I handled things. I hope that now I will do things differently - not just with people with dementia, but with many illnesses.

[BirdbyBird]

I read Still Alice months ago....having a life long interest in brain research and having read a couple of the medical technical book out regarding "The Forgetting". So the physical process had been understood and with the volunteering with Herschel, the actual process had been witnessed. But I found it interesting to read from Alice's perspective, what might be! Just as several individuals with Autism have been able to later write about what they experiences as a child. (A particularly recommend, "There is a Boy in There" ...the mother and the son alternate chapters....what he felt and what she saw...)

Oh, Beth.....that respect for all and the right to be treated with dignity....is to me the central point. I spent two years doing graduate work in clinical psych and working in a Mental Health Center.....and later moved into the area of Special Education. I saw the effects everywhere. Some families (or educators) only saw the limitations and therefore never expected and therefore never worked to develop the same behaviors that they would for any other child or individual.... That they grow and develop to be the best they can be and a responsible citizen of the community..... (I thought of that last week when Soosie wrote her disapointment with her job this year...that all they are expecting her to be is a custodian....not an educator...) Who are we to really know what an individuals best is....all we know is that it is the next step past where he/she is now. (Or in the case of Alice...who are we to know how long an individual holds on to who they are!)

The hardest were the individuals with profound physical and apparent cognitive disabilities....I say apparent cognitive disabilities b/c for so many years especially before the use of computers and fancy scanning techniques....if an individual was not able to speak or use their hands...it was often taken to mean they couldn't communicate.... When I interviewed staff I would remind them that of five students with profound handicaps in front of them...that psychologist would tell them have an IQ of less than 30......do we really know what their brains are processing.....if just one individual is locked inside a body without a "voice" how can we not treat each one as if there is a thinking feeling individual inside... (and I could give them examples....) Communication comes in many ways....not just with words.....

The diverse population of individuals with Autism is another group of individuals whose brains do not always process and respond like "normal" individuals......After years of working with, reading about and meeting many individuals with Autism...and others with unique sensor perception and ways of thinking...I have found that each individual needs to be seen and appreciated as who they are...not evaluated, judged, taught....as we have experienced the world...

Teachers that think that children "can't" learn...because the teacher has never been able to figure out that though the child may not be able to learn using the same "system" (maybe the only one that teacher knows ) that was used to teach these ten other students ....may not be the one that THIS student learns best with.....

Some of my best memories are of a parent who finally UNDERSTANDS and SEES that inside their child with Autism is a living thinking feeling boy/girl (..the mothers usually already know this!)...the fathers sometimes took longer. And then we would work together to give that child a way to communicate back to us! Communication is power. It is about choices.

The incidence of behavioral issues declined as the parents and educators treated a child with respect that the child DID have feelings and choices that wanted to be made. Some "choices" were still not allowed but...just being heard and acknowledged changes a lot.

Even with my background.... I had always wondered how staff working in geriatric facilities could do it day after day.....well that was before supporting my father though his decline and the last four years of volunteering with the dogs. Because most of our visit are back to the same facility for the past four years...we have gotten to know many of the residents and many of the staff....I recognize in the individuals living there the same individuality and diversity I learned to appreciate in my students...and in the good staff I recognize in the tone of voice that they use and the conversations and questions that they have....that underlying respect for individual dignity and needs.....and the presumption of life fully there....

I will put my soap box away....is only I was as good at graphics as Mitch and Vickie!